"When they all make you feel like a problem girl, remember, you're no problem at all." Rob Thomas, Problem Girl

Saturday, November 23, 2013

What follows is a description of a depression episode as I experience it. This was written on the tail end of an episode very late at night. With a few changes, it is exactly as I wrote it during that depression episode. It is important to note that this is not how everyone experiences depression - my depression is intertwined with anxiety, which complicates things. As they say on TV, your mileage may vary. The content below can be very triggering, so read carefully. I am putting the rest under a read more cut for this reason.

Thursday, November 21, 2013

Or not disabled, really, the social model makes that distinction. I am ashamed to be impaired.

Disability, in a nutshell, is what society imposes on you. Impairment is the biological condition that causes society to disable you in the first place.

Here's the thing: Not everyone who is considered disabled by society has an impairment that can be defined by the ADA as "substantially limit[ing] one or more major life activities". Say, someone who has dwarfism without any associated conditions - just the short stature. Dwarfism is considered a medical condition and those with dwarfism are frequently discriminated against because the environment isn't built for them - just as it is not built for someone who uses a wheelchair. If society was simply more accommodating, little people could go about their days exactly the same as someone of average height.

That doesn't work for me. Not everyone who is disabled has an ADA-definable impairment - but I do. Several of them, in fact. And I'm tired of feeling shamed.

Sure, if society was more accommodating, my life would be 90% easier. But there's still that other 10%. I would still have chronic pain and fatigue. I would still be unable to walk distances. I would still have crippling, yes crippling, anxiety that grabs me in a vice grip and doesn't let go. I would still have depression that sends me into a fetal position, sobbing and loathing myself.

If society was more accommodating, if ableism didn't exist, I would be able to obtain a power wheelchair easily with features that could mitigate the chronic pain and fatigue. I would be able to go anywhere I liked with that wheelchair without a second thought, including on and off public transportation. I would be able to be open about my mental illnesses and my medication without fear of repercussions. I would be allowed to do things my way, without being told that this is normal and I must do everything in the normal box or not do it at all.

But it would not erase my pain, my fatigue, my panic, my depression. And I'm tired of feeling ashamed for that 10% of me that will never be able to do the "normal" things, even in a different way. I'm tired of social model activists acting like if we fix the world, everything will be peachy keen. I'm tired of being told that the reality of someone who is solely disabled by structural barriers is anywhere close to mine. I'm tired of my own internal battle, walking the fine line between cure and treating the parts of my impairments that make my life miserable. I'm tired of feeling like a bad crip for wanting my mental illnesses to go away and never return. I'm tired of not fitting anyone's idea of what disability should be.

And so I can no longer support the social model of disability. Because though it is a good theory, though I have subscribed to it for as long as I've known what it was, it is not enough for me. It no longer fits my reality, as so many things have changed with my body and my disabilities over the years since I first discovered the social model. The radical model - though I identify with many of its values - is not for me either. Some impairments may be socially constructed - and there's a lot to be said with that about the medical profession and diagnoses - but mine is not. I am still impaired. I will always be impaired. And no amount of societal rearranging is going to change that.

I don't know what model I subscribe to, now. I feel a bit adrift without a model to cling to. Maybe I'll create my own, though I have no idea what it would say. But the fact of the matter, my life does not fit into a neat box, whether that box is models of disability or disability itself. If and when I can somehow come up with a model I can support, I will let you know.

Until then, I am an outsider, an activist with her own rules.....and you should probably watch out.

Tuesday, November 19, 2013

Parents of children with disabilities are often told, when their child is first diagnosed with a disability, that it is okay to grieve the loss of a "normal child". I've even seen it taken a step further, with suggestions that parents of children with disabilities go through the same five stages of grief that people go through when someone dies - denial, anger, bargaining, depression and finally acceptance.

I take serious issue with this terminology. First and foremost, because nobody died. Despite what mainstream media and organizations may say to the contrary, your child is still alive and (most likely) thriving, just in a different way than you expected. Equating disability to death and using the exact same scientific grief scale implies that those two are one and the same, equally horrible outcomes and that people should and will react to a disability diagnosis the same way they will react to a death.

To be clear, I'm not talking about parents whose children suddenly acquire a disability. That's a whole other can of worms. It's different in that situation, because there is a normal child to grieve. And though it's true that no one died in the traditional sense, that child will never be the same. Their nondisabled self, for all intents and purposes, is dead. And it doesn't make their life any less worth living, but it does radically change things. They already had an established life, a nondisabled life, and now they have a completely different life, a new life. So in that circumstance, I think it's acceptable to grieve. But for disabilities that are present from birth or very shortly after, like Down Syndrome, or cerebral palsy, or autism, there was never a "normal child". This is your child's default setting. This is the way your child always has been and always will be. Grieving for a "normal child" implies that there was a "normal child" to begin with - and with a lot of disabilities, that's simply not true.

When you decide to have a child, by whatever method you choose, you are not choosing to have a nondisabled child. Even adoption is not foolproof - there may be a disability that is not apparent just yet. There are no conditions you can invoke so that you can avoid the dreaded disability. You are choosing to have a CHILD, period. If your child has a disability, don't get upset because you didn't get what you wanted. Your child is not a restaurant meal - you cannot say to whatever babymaking deities you believe in, "I didn't order this" and return it to the kitchen. You have to go along for the ride - for better or worse. Grieving a "perfect" child that never existed will do neither you nor your child any good.

What are we telling disabled people when we tell them that their parents grieved as though there was a death? What are we telling them when this process is actively encouraged as a form of catharsis? Is it any wonder that Tim Bowers chose to end his lifeone day after learning that he would be permanently paralyzed? In our society, disability is a fate worse than death, and disabled people are living ghosts.

I don't want to be a ghost. I want to be a person.

If you're a parent, and you've felt that grief, it doesn't mean you're a bad parent, either. But it does mean that you need to think critically about why you felt that grief. What did you know of disability before your child was diagnosed? What are the portrayals of disability you've seen in the media? When the doctors told you, what did they say? Did their tone convey solemnity, as if telling you of a loved one's death? Were they afraid to say the words? All that and more contributes to the idea of disability you form. Ideas, as any sociologist worth their salt knows, do not exist in a vacuum. They are influenced and shaped by everything around us. Take a step back and learn from your children, who are undoubtedly still happy, despite the Big Bad Disability. Remember that disability is not a deficit or a cruel twist of fate - it simply is.

To parents, I say - it's okay to be sad. Sad that your child will face a more difficult path than most. Sad that the world may never see them as full human beings. But it's not okay to grieve. Because nobody died.

Wednesday, November 13, 2013

"If three million children in America one day went missing – what would we as a country do?"

What would we do if three million people in the United States were being told that they are missing?

Missing from where, I'm not sure. Missing implies that there is a place that they are supposed to be. Missing implies that something is lost. The remote control can go missing. The umbrella you left in a taxi can go missing. But people who are living and thriving and loved, people who have their own agency, people who are exactly where they want to be - they can't go missing.

"And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?And, if they do – who cares for these children?There is no national plan to build a city for 500-thousand people."

Somehow, we have fallen into a time warp and have been whisked away, back to the days where leprosy was feared above all else, and leper colonies were set up on remote islands.

Except it's not leprosy anymore. It's autism.

Scared yet?

"...we’ve for the most part lost touch with three million American children..."

No, Autism Speaks. NO. YOU have lost touch with millions of American children - AND adults. I'm really not convinced that you were ever in touch with them in the first place. You have repeatedly failed to listen to what THEY want, what they need, as opposed to what you think they need. The images portrayed in your media - of stolen children, burdened by a grave illness - is not their reality. It's not MY reality, as a friend to many Autistics. Your words are not just insulting. They're not just untrue. They're terrifying. And if there is someone out there reading this who is not scared of Autism Speaks, I suggest you read...and reconsider.

These families are not living.

Oh really? Because I see living everywhere that I look. Spinning, stimming, dancing, singing, flapping - that's all living, despite your statements to the contrary. Autistic people are living. Family members of autistic people are living. And they are all living with the knowledge that diversity is rich and beautiful. That autism may present some struggles but the far more pressing problem is the attitude that an autistic life is not a life. An attitude that you have perpetuated again, and again, and again.

Autism Speaks, you have made a grave error in judgment. Your words intended to invoke terror have backfired. Because we're terrified, all right. But not of autism - of you. You have the money and the power to shape the views of every American and you are using it to advocate segregation and genocide.

But your power is waning. People are breaking out of the hypnotic haze you have put them in. Self advocates and parents who were once bitter enemies are united now, in calling for your destruction. John Elder Robison, the only Autistic to ever have some sort of role in your organization, has resigned. You now cannot claim to have any Autistic representation in your organization at all. The world has shifted on its axis as more and more people rally against you.

This week is the week America will fully wake up to the autism crisis.

This is the week America will fully wake up to the Autism Speaks crisis. Guess what? They already have. This is the week you meet your downfall and I couldn't be happier. The times, they are a'changin - and you better get with the program or else you'll be left behind.

Tuesday, November 12, 2013

During the weekend of November 8th - 10th, 2013, I was thrilled to attend the Long Island Doctor Who convention at the Clarion Hotel and Convention Center Ronkonkoma. As an avid Whovian, I was eager to go to my first convention and meet like-minded people.

I was not prepared to find that the convention was inaccessible to me.

I was born with cerebral palsy, a disability which impedes my mobility and causes chronic fatigue and pain. I also have an anxiety disorder which, in addition to generalized anxiety, manifests itself with panic attacks.

My friend Meg (who also has cerebral palsy) and I took the Long Island Railroad to the Ronkonkoma station early Saturday morning. We planned to meet up with our friend Oscar there and take advantage of the courtesy shuttle to the convention site. But when we arrived, we discovered that Oscar had been sitting in the cold, watching as the shuttle pulled up and pulled away multiple times. Oscar uses a power wheelchair and the shuttle, despite statements to the contrary on the convention website and in the convention program booklet, was not wheelchair accessible - a direct violation of the Americans with Disabilities Act. The shuttle van had three small steps and no ramp or lift. Upon hearing of the situation, the shuttle driver spoke to his supervisor, who suggested that Oscar take a medical transport to the convention for $85. This suggestion is ludicrous and insulting. Besides the fact that segregated transportation is inherently unequal, a perfectly healthy wheelchair user should not have to utilize a medical transport which could be better served transporting people who are actually in need of medical assistance in order to get to an event. In addition, it is blatant discrimination to have a disabled person pay $85 (which, incidentally, costs ten dollars more than a three-day pass to the convention) for transportation when able-bodied people receive transportation free.

Because Meg and I are capable of climbing steps with assistance and our walkers folded enough to fit in the van’s trunk, we were granted access to the shuttle and the rest of the convention. Oscar was not. Faced with no other option for getting to the convention, he was forced to turn back and head home, wasting the money he had spent on a convention ticket.

We arrived at the convention to find the “Disability Services” desk mysteriously unmanned. The people at the general information desk seemed puzzled that the shuttle had not been accessible and said there must have been a miscommunication. They assured us that something would be done. To my knowledge, nothing was done and no formal apology was issued. The “Disability Services” desk remained unmanned throughout the entire time we were at the convention.

The convention venue itself was physically inaccessible. There were many heavy doors separating hallways from each other that were difficult for someone with limited strength to open, let alone navigate a mobility aid through. The rooms where the panels and events were held were crowded with chairs, leaving only narrow space for people to walk. Meg and I constantly were pushing through, trying to make space for our walkers. There were no spaces in the panel rooms for someone using a wheelchair to sit, if they could even fit into the room in the first place. I began to feel like my walker and I were a nuisance, a bulky apparatus clogging up the hallways and small rooms.

On Sunday afternoon, Meg and I spent some time in the Vendor’s Room on the lower level. While attempting to get back to the elevator, we were caught in a crush of people moving from Panel A to Panel B, as well as people streaming in and out of the Vendor’s Room. The artist tables set up in the hallway drastically narrowed the already limited space, once again making it difficult for Meg and I to navigate with our walkers. Surrounded by people, I began to panic. I was gasping for air and extremely dizzy. We made our way back up to the lobby, where Meg explained to the woman at the information desk that her friend was having a panic attack and asked if there was a quiet room away from people where I could calm down. The woman seemed confused and said that no, there was not. We ended up sitting in an empty hallway until I felt like I could breathe again.

Many conferences have a designated “Quiet Room”, where people who are feeling overwhelmed can go to relax and calm down. Given the amount of rooms at the Clarion Hotel, it would not have been difficult at all to orchestrate a quiet room from the beginning or at the very least have your staff find and open up a room when they were told that it was needed. None of these things were done.

When I go to an event, I expect to feel valued, as a paying attendee. I did not feel that I, as a person with multiple disabilities, was respected or valued at your convention. I know that Long Island Doctor Who 2 has already been scheduled at the same venue. I fear that the same inaccessibility will result. Because of these concerns and my negative experiences at Long Island Doctor Who, you will not be receiving my money next year. I refuse to support and attend a convention that held my needs in such low regard.

The Doctor says that he’s never met anyone who wasn’t important. But your convention and apathy towards accessibility made me feel like my fellow disabled Whovians and I were not important enough to be worth considering. I am saddened and disgusted that a convention representing such a diverse fandom failed to include people with disabilities.

I would be happy to discuss accessibility further with you and help to ensure that Long Island Doctor Who 2 is more inclusive. You can reach me at caraliebowitz@gmail.com. I sincerely hope that accessibility will now become a priority.